Memoirs of a little bird

Red Skin Syndrome Q & A

Questions and Answers about RSS and TSW

1. What is Red Skin Syndrome?

Red Skin Syndrome, or RSS, is a broad term used for when the skin has become dependent on topical steroids. It is also know as Topical Steroid Addiction (TSA) and Steroid-induced eczema. Your skin will become inflamed, turning red and itchy.

2. What is Topical Steroid Withdrawal?

The only known “cure” for Red Skin Syndrome is Topical Steroids Withdrawal, or TSW. I say “cure” because I hope one day there is a better way to manage RSS (or to have the condition gone forever). This is when you cease from using topical steroids (or any other form of steroids) so your body can start to heal from the abuse of these drugs.

3. How does my skin become dependent on topical steroids?

If you use topical steroids for more than 2 weeks (some say 2-4 weeks), then you run the risk of becoming dependent on this drug. This can cause steroid-induced eczema.

4. What is steroid-induced eczema?

This means that the eczema you have is caused by the topical steroids and is not normal. This is why many doctors will continue to prescribe more steroids since they do not understand it is an iatrogenic condition.

5. What is iatrogenic?

The true definition of iatrogenic is: of or relating to illness caused by medical examination or treatment. This means that RSS is iatrogenic because it is caused by the overuse of topical steroids.

6. Can I have a mixture of RSS and severe eczema?

In short, no (in my opinion). Your severe eczema is most likely Red Skin Syndrome. If youthave been using topical steroids (as well as other forms such as oral and injections) for more than 2 weeks, your eczema could be steroid-induced, hence why it has turned into ‘severe’ eczema.

7. What are some RSS symptoms to look out for?

In truth, there are TONS. Before stopping topical steroids, you may show symptoms of an increased allergic response, a deep itch or burning of the skin, rebound redness between applying topical steroids, and a worsening of eczema symptoms (of which you need higher potency steroids). After ceasing topical steroid use, the most common is severe red skin that can spread to all different parts of the body. Red sleeves, burning, severe itch, oozing (which can come with an odor), hair loss, extreme shedding of skin, blurry vision, swollen lymph nodes, nerve pain, edema, adrenal issues, cortisol issues, a severe spike in your C-Reactive Protein levels (as well as IgE levels), skin atrophy (elephant skin), insomnia, fatigue, change in appetite, and altered thermoregulation (feel extremes of hot and cold).

8. Does everyone have the same withdrawal process?

No. Everyone’s journey is unique and can come with different symptoms at different times.

9. How long can a withdrawal last?

There is a wide range for healing time. Some have overcome their withdrawal process in 6 months, while others have to endure a longer process from 1-5 years. It usually correlates with how long you used topical steroids, the potency of the steroid, the frequency of use, and where on the body it was used.

10. Are there different types of topical steroids?

Yes. There are 7 classes of steroid potency – 1 being super potent and 7 being mildly potent. Here is a chart you can go by to see the different names: Steroid Potency Chart

Also, the form of the topical steroids is also an important factor. Creams are less absorbent than ointments.

12. Can Red Skin Syndrome affect my private areas?

Yes, and these areas are super absorbent.

13. Will using a stronger steroid help my skin heal faster?

This is very dangerous and should never be done. As stated above, certain parts of the body absorb the steroids faster and if a strong steroid is applied to an area of high absorbency, this could be putting you at risk for becoming dependent on the drug.

I know we all wish to have perfect skin right away, but at what cost?

14. What is classed as a long time of using topical steroids?

It is not recommended to use topical steroids on the skin for more than 2 weeks. The longer the use, the more risk is taken to develop RSS and the longer your withdrawal process may be.

15. Can I get RSS from taking oral steroids or having steroid injections?

Yes. Oral steroids are systemic and can cause the red rebound flares just like topical steroids. Injections can definitely cause these problems as well and can contribute to longer withdrawals.

16. What medication options are available to us going through this?

To help manage the symptoms, there are a few options available. Doctors can prescribe sleep aids, antidepressants, anti-anxiety, and antihistamine pills. Pain pills as well can be prescribed if your doctor feels you need them.

Another drug available that some patients do try are oral immunosuppressants.

17. What is an oral immunosuppressant?

These drugs, usually given to cancer and transplant patients, inhibit or prevent activity in your immune system. They can calm down many of the RSS symptoms.

However, there are risks with taking this drug. You must have your blood checked monthly to make sure that your kidney levels do not rise. Also, if taken long term, these drugs have a risk of causing cancer. Here is a list of the drugs and some of the risks while taking them: Immunosuppressive Drugs

No, they only suppress the symptoms. They do not speed up the process.

19. What are Protopic and Elidel?

They are topical immunosuppressive ointments. In my opinion, I would steer clear of these. They may also be contributing to longer withdrawals. I used this on my body and face and I have had a very hard withdrawal on my face.

20. Are there medications I should avoid?

If you get an ear infection or eye infection and need antibiotics during this time, make sure to tell your doctor that you want ones that are steroid free since many come with steroids and even these small doses of steroids can cause a flare. Also, do not apply antibiotic creams and anti fungal creams for too long. Yes, antibiotic creams have anti-inflammatory properties, but your body can become immune and resistant to them after a while.

21. How do I know if I have an infection?

Good question, and sometimes hard to answer since many confuse TSW ooze with an infection. If you feel there is something wrong (you see a boil or open, weepy wounds that raise concern) go to your doctor and have it swabbed. You can also have bloods taken to make sure. Trust your gut. It doesn’t hurt to get it checked out.

You don’t need steroids for an infection. If the infection is bacterial, then it needs antibiotics. If the infection is fungal, it needs anti-fungals. Mixing steroids in with those can cause more damage than good. *this is from my own research and knowledge from doctors I have spoken with*

23. Why can’t I find a supportive doctor?

Many doctors are still sadly unaware of Red Skin Syndrome. The best you can try to do is inform them by giving them the ITSAN brochure about RSS and TSW: ITSAN Brochure 2016

If they still don’t give your support, then you may want to try another doctor.

24. What if I can’t find a doctor who supports me? Are there doctors who are supportive?

27. Does diet help?

The lead doctor in TSW, Dr. Rapaport, says diet won’t help. However, I feel diet can definitely help with symptoms. Night shades like tomatoes, eggplant, and green beans can bring on the itch in a lot of us. An alkaline diet may help with a lot of inflammation. Taking away alcohol and sweets may also help with the itch and redness. I don’t feel the diet will speed the process, but it may help lessen some of the symptoms.

28. What about supplements?

I definitely think supplements are a good idea. People take all different kinds. I take: B12 (methyl-folate in my case since I have part of the MTHFR gene mutation), VitD, Biotin, a Probiotic (which is very important if you are taking an antibiotic), CuraMed, Fish oil (or Omega 3-6-9) and Vit C (in pill form and in lypo-spheric gel form). There are many other vitamins you can also take depending on what you need help with in your withdrawal.

29. What types of clothes are best?

PJs! Any 100% cotton will be great. Around the house, many prefer comfy, baggy clothes. Some even prefer no clothes. All up to you.

30. What is Moisture Withdrawal?

Some people chose to do Moisture Withdrawal, or MW, which is to not use any type of moisture on their skin. Some do it long term, some short term. It’s not for everyone, but it doesn’t hurt to try if you feel the need for it. I didn’t like MW but many have found it more comfortable than applying balms, lotions, or oils.

31. Why does sweat burn my skin?

Our skin is so open and easily irritated, so when we sweat, there is salt in our sweat and it can make the skin burn much like going into the ocean with an open cut.

32. Why does my hair fall out?

To be honest, I am not quite sure, but I think it has to do with the toxicity of the steroids in your body. I had my hair fall out and I dealt with massive flaking and oozing on my head. I used steroids and Protopic on my face which could also be why. Some lose their hair and some don’t.

Questions for ME

1. Did you have eczema all of your life?

I have had eczema since I was a little girl. I am not sure if it was brought on by my two cats since I now know I am allergic to cats, or if it was fungal since I danced a lot. I used OTC hydrocortisone on different spots whenever needed. I also have oils from a doctor but have no idea, to this day, what was in them.

2. What happened when you were working on the cruise?

So, to anyone who has seen my ‘The Doctor’s Show’ segment, they messed up my back story in a big way. I knew it would happen too since they all seemed confused whenever I tried to give them a time line.

Before working on cruise ships, I had normal eczema. Nothing crazy, just skin problems here and there. Once I started working on board, I caught something (most likely fungal) and went to see a dermatologist about it since it got so bad. When she saw me, she said she knew exactly what was wrong. No skin biopsy, no scrape or culture, just “knew”. This is when my journey with steroids began.

3. What medications were you on?

On and off for 3.5 years, I was using 2 antihistamines, an oral antibiotic (Bactrim and Doxycycline), an oral anti-fungal (Lamasil), a topical anti-fungal (Naftin), Protopic .1%, and Alclometasone Dipropionate. I was told to use the steroid, full body, Tues and Thurs, and the Protopic everyday. I was even put on Ciclo (a type of immunosuppressant) at one point but only did it for 3 months and stopped because I didn’t understand what the drug actually was and why I had to keep getting my blood taken for it.

4. What were some of your first symptoms?

I had a rash form on my back and chest and it was SUPER itchy. It started to spread to my legs and up to my mouth and eyes.

This is when I went to the doctor and she said I needed oral steroids and a steroid shot. So, I did. Then once the steroids were done, the rash came back. So, went to another Urgent Care doctor who said I also needed more steroids and gave me another pack. Did it again and as soon as I had tapered off, the rash came back. That’s when I knew I had RSS.

5. What do you use to help your skin?

See number 25 above.

6. Did you ever have a GoFundMe?

Yes, my friend hosted one for me. Do not be ashamed in asking for help. Spread awareness while doing this. It is important for people to know why you are suffering and how they can steer clear of RSS.

7. Do you have a supportive doctor?

I do not have a supportive dermatologist where I live. My GP is supportive and is learning about RSS through me. The doctor I saw on the show, Dr. Batra, is also supportive and is in Beverly Hills, CA.

8. Do you still have flare ups?

I do not have major flare ups anymore. The last major one I had was in late December 2015 coming back from a trip to see my husband. I ended up in the ER with a bad infection and took some antibiotics for it. (Add on from 11/27/17) The flare ups I have are not as bad as the early stages, but my skin still seems to get the red sleeve whenever I do flare.

9. How is your skin right now?

As of right now (34 months TSW, Nov 2017), my skin is very dry from my stomach upwards. I do not shed profusely anymore, only lightly. I can also be red, especially patches on my face. I still get very itchy and have those moments of emotional struggle. I usually keep my arms covered to help me from scratching.

10. What medications am I taking now for TSW?

I am no longer on any medications. For a long time I took Atarax to help me sleep, as well as Trazodone for sleep. One is an antihistamine, the other is an anti-anxiety.

Feel free to leave more questions in the comments. I will try to answer them as soon as possible.

I am not a doctor or a medical professional. Any thoughts expressed are my own.